Hanneke de Bruijne is 58 years old, lives in the Netherlands and in 2008 received a news that changed his life: he suffers from amyotrophic lateral sclerosis , also known as ALS.
In 2015 came, without a doubt, the worst moment of all.
This disease advances rapidly and relentlessly, so much that he had already lost the ability to speak, mobility and began to need a mechanical ventilator to breathe.
Only those who suffer from ALS or those close to the patient know what this type of existence means, this illness where the person loses, little by little, all contact with the world.
Hanneke has a husband and three children. Overnight, he stopped being able to talk to them. To tell them if he was hungry, cold, without being able to say that he loved them or that he was happy to have them by his side.
We can not forget that every ailment is affected in turn by that emotional world that, when collapsing, accelerates the own decline and that helplessness where the person is losing even the desire to continue in this world.
That is what this Dutch woman began to feel, until the University Medical Center of Utrecht gave her good news: they were going to help her to communicate with her family again .
A breakthrough for people with ALS
This is one of the most hopeful advances for those affected by amyotrophic lateral sclerosis.
It has been possible to develop a type of autonomous communication thanks to a chip and a computer, so that the person can speak without having to generate any movement.
It is not telepathy, but that extraordinary conjunction between neuroscience and engineering where the electrical signals of a small device manage to emit various waves from the brain to an electronic device.
The work has been published in the New England Journal of Medicine and the results are sensational.
Below, we detail each of the steps.
It all started as an experiment
This was communicated to the relatives of the patient: it was going to be an experiment and she was the first experimental subject to receive a chip with which to develop a new mode of communication, which could be successful, or not.
The family did not refuse. De Bruijne was a year without being able to speak , therefore unable to decide for herself.
However, when the operation came out as the scientists themselves expected, this woman thanked them “for giving her life back”.
- Nick Ramsey was commissioned to carry out this experiment. He is the director of cognitive neuroscience at the University of Utrecht.
- Its main objective was not just to offer a new mode of communication to people with ELA.
This chip can also change the lives of all those people with brain injuries who have lost their ability to speak and move.
The intervention began with the installation of a sensor in Hanneke’s brain. This device has a very specific purpose: to detect the moment in which the person wants to start writing on the tablet in front of him.
- It is clear that patients with ALS can not move. So, it is the brain’s own chip that sends the order to the computer to go, letter by letter, making the selection.
- This selection is made by sending electrical signals. Something sensational.
- Described in such a simple way, it seems to us without a doubt something amazing. However, it must be said that the first operation performed on Hanneke was not successful.
When the sensor was implanted, it did not work as the scientists expected.
- They had to spend 7 more months to improve the system, to fine-tune that mechanism of detection and sending of signals with which Hanneke could communicate effectively.
After almost a year of waiting, the miracle emerged. This woman who suffered from ALS since 2008 was able to talk again with her children and her husband. It was like coming out of a tunnel of darkness.
For the freedom and dignity of the sick of ELA
Hanneke lives next to her tablet . On the screen, there is always a series of chips and a red cursor that moves slowly to go from letter to letter.
- . When you want to select a letter, just imagine your index finger making the selection . After 20 seconds, that selection runs on your tablet.
After a few minutes, the phrase is generated so that the voice device of the tablet itself communicates it to its surroundings, to its own.
- While it is true that you need plenty of time to say a complete word, the computer itself has already automated many frequently used words and they are generated more easily.
- Now, Hanneke can communicate orally and also write emails.
This is how he has contacted media around the world to demonstrate that all ALS patients now have the opportunity to recover part of their dignity , independence and safety.
Because, when a person stops being able to move and get to communicate with the people he loves, the world is less world, and the person, loses his courage, his energy and his spirits.
Medicine and science make real advances that fill us with hope. We hope you never stop surprising us.